Tribute to Talking Point

Lynne

Registered User
Jun 3, 2005
3,433
Suffolk,England
I am reproducing below part of a response posted elsewhere in answer to a researcher asking about the popularity and benefits of health forums like Talking Point.

It occurred to me that perhaps we don't say 'thank you' often enough to the founders and moderators of TP, and express how much their creation means to us. This is what it means to me.


Medics, nurses and care assistants only spend an hour or so (sometimes just a MINUTE or so) with dementia sufferers. They seem to have little or no insight of the effect dementia has upon the whole family & home situation, however 'good' they are (until WE present ourselves at the surgery, suffering from stress & depression etc.)

Talking point contributors often spend the 'early stages' running themselves ragged trying to understand what dementia is all about and meet the needs of their own family (spouse + children) AND the needs of the person suffering with dementia. If we're 'lucky' (?) we live quite near Mum (*or whoever) and if not we're consumed by guilt because we're "not doing enough", or in some cases because the AD sufferer resents attempts to help, is in denial of their problem etc. We may have other family members to share caring duties with, or we may be sole carers. Or, we may have other family members who are singularly UNhelpful and do more harm than good, by being obstructive, in denial or just plain argumentative at a time when we need it least. If the GP is involved yet (& they frequently aren't) they may, or may NOT (thankyou, N.I.C.E.) be able to prescribe meds. to slow down the memory loss & relieve anxiety.

Once sufferers are past the early stages, and actually need help with day to day tasks, living arrangements are frequently altered so that Mum (*) comes to live with one of her grown up children & their family. This is a HUGE adjustment for everyone to make - in physical, mental & emotional terms - and often the AD sufferer appears to go downhill fast because they are trying (& failing) to learn to cope with their new situation. (In my case circumstances permitted me to go to live with her, but this still caused her difficulties, even though she is still in her own house) Again, the carer is often consumed by guilt because 'the plan' didn't work, but seemed to be the only viable option and now it has turned out not to be an improvement. Worse, now everyone is suffering to some extent. The carer may have given up (or lost) their job for this, to take up part-time work to enable them to devote more time to 'caring'. Ergo, reduced income which £40 per week (if they claim it) does NOT cover. Family relationships can become strained to breaking point. More guilt.

I can't comment from personal experience past this stage, but you have only to read some of the despairing threads on Talking Point to start forming a picture of why we need each other here, and I suggest you do so if you are serious about your research.

There is nowhere else which allows one to question "Why this", "How do I ... (deal with that)", "What the Hell can I do about ..." speak freely, vent some of the stress and pain and anger, and get straight, honest, understanding answers from other people who know what REALLY goes on, and who care enough to share their acquired wisdom & experience in dealing with this awful disease and the way it tortures & crucifies us. And I don't just mean "There there dear, you have a good cry" We can and do tell each other if we think someone's got it wrong, and try to put different ways of looking at (& dealing with) situations. We exchange views & opinions, discuss differences, and (perhaps most important of all) know that here we can say unthinkable and unsayable things which we dare not express anywhere else, because of the constraints of convention. This is an unspeakably hellish disease for all involved, & unspeakable, bitter thoughts need to escape somewhere, or we shall be consumed by them.
 
Last edited:

mel

Registered User
Apr 30, 2006
1,656
62
Sheffield
Hi Lynne
That's absolutely fantastic....
I agree with everything you say..
Wonderful!!
finding this site has given me an absolute lifeline....I have learned so much in the short time I've been a member.....and it keeps me sane!!!
Wendy
 

Kathleen

Registered User
Mar 12, 2005
639
65
West Sussex
Hi Lynne

Well done, I have been able to share thoughts and feelings that only those on this site understand, others who are unaffected by AD would never ever be able to understand.

Here, talking to others, I feel comfortable, understood and never judged.

Thank you all, from the bottom of my heart.

Kathleen
 

DickG

Registered User
Feb 26, 2006
558
84
Stow-on-the-Wold
Hi Lynne

How right you are , we owe so much to those who created TP and to the moderators who do a sterling job.

On TP I can be the hard man, the wimp, decisive, indecisive, happy, sad and even suicidal and there is always someone who has been there, who understands and can offer sound advice. Thank you all.

Dick
 

dmc

Registered User
Mar 13, 2006
1,157
I too would like to add my own thanks to the others, apart from all the serious issues ive also been so uplifted by the spirit of those on here as well.
I dont know what id do without TP and its members
THANKYOU xx
 

Nutty Nan

Registered User
Nov 2, 2003
788
Buckinghamshire
Longest thread

I couldn't agree more with all that has been said so far! This should be the start of the longest thread ever - on TP, we stand united.
We don't have to mince our words, we give and get support, nobody sees our tears (very therapeutic at times!), and above all, we never have to worry about boring someone by talking about the same old subject, yet again ....... With (most) friends and colleagues I try and avoid the subject, pretend that it is no big deal, for fear that they will end up avoiding me if I 'go on about it'. But sometimes that's all I want to do: talk about this totally absorbing subject that has turned our lives upside down and keeps us all prisoners. My husband has lost his freedom, his independence, his dignity and a lot of his spirit, whilst the rest of the family are caught up in his care, and with that have lost the spontaneity of the brighter side of life.
As soon as we manage a new development on this scary rollercoaster, something new hits us, and it is the easiest thing to visit TP, ask everyone else's advice - we never feel odd, nothing is tabu, no answerphones that don't get answered, no office hours, no GPs/CPNs/SSs who make us feel we are a nuisance, we are never on our own, there is always someone who can give us advice, a lift, a hug, or cheer us up with a silly joke - and there is always someone else who is worse off: not always an easy read, but it does put things into perspective and often makes me count my blessings.
THANKS to those who started it, and to everyone of you who is keeping TP going. It is, indeed, a veritable lifeline!!!